Baby Joseph can go home to die, but without tracheotomy: family says unacceptable

LifeSiteNews ^ | 2/28/11 | Patrick B. Craine

[wagglebee]

To join a Facebook page in support of the parents of Joseph Maraachli, click here.

LONDON, Ontario, February 28, 2011 (LifeSiteNews.com) - Dying one-year-old Joseph Maraachli, whose parents are entangled in a legal battle after doctors refused to perform a simple procedure that would allow him to die at home, should have had that procedure “a long time ago,” a pioneer in the field of neonatology has told LifeSiteNews.com.

But the physician’s statements come on the same day that the hospital where Joseph is being kept has said it is willing to send him home, but with an important catch: they still refuse to perform the tracheostomy that allowed a sibling of Joseph’s who had a similar condition to live another six months at home. Instead they will simply return Joseph home, and then remove his ventilator, after which he will almost certainly die within a matter of minutes.

This solution is unacceptable to the family, Alex Schadenberg of the Euthanasia Prevention Coalition told LSN this afternoon. Schadenberg has been working closely with the hospital to have their wishes respected.

“They need to do a tracheostomy,” said Dr. Paul Byrne, an Ohio neonatologist with nearly five decades of experience and a former president of the Catholic Medical Association.  “If the baby is stable otherwise, and has a tracheostomy, then the baby can be taken care of at home.”

Joseph Maraachli

In a “public information campaign” launched Sunday night, London Health Sciences Centre, where Joseph has been treated since October, defended their refusal to perform the tracheostomy.  They called the procedure, which involves inserting a breathing tube through a tiny slit in the throat, “invasive,” and said it is “not a palliative procedure.”

“It is frequently indicated for patients who require a long term breathing machine,” they wrote.  “This is not indicated for Baby Joseph because he has a progressive neurodegenerative disease that is fatal.”

This wording was repeated in today’s statement in which the hospital said Joseph could go home to die.

But Dr. Byrne told LifeSiteNews that “there’s no case” when a child is on a ventilator where the tracheostomy wouldn’t be indicated.

The hospital is now asking Ontario’s Office of the Public Guardian to intervene and allow them to take Joseph off his ventilator, after the parents have continued to refuse consent.  That office has been unsuccessful in asking other family members to consent instead, and could intervene itself any day.

Dr. Byrne called the attempt to have the state remove Joseph’s ventilator “terrible, absolutely terrible,” and insisted that in his fifty years in neonatology he’s never removed a child’s ventilator.  “I’ve never seen a time to turn off a ventilator,” he said.  “If a baby has a disease process that’s so bad that they’re going to die, then they die on the ventilator anyway.  So you don’t have to stop the ventilator.”

He also criticized the common phrase “life support,” saying, “Life is either there or it’s not there. You don’t have to hold up the life.  What we do in medicine are actions ... that support the vital activity of respiration.”

“Assuming doctors can do something to support the vital activities, we ought to do them,” he explained.  “And a tracheostomy ought to be done, and the baby ought to continue on the ventilator.”

Though doctors have said Joseph is in a “vegetative state,” Dr. Byrne called it a “made-up term” similar to the notion of “brain death,” which he said was invented “simply to get beating hearts for transplantation.”

Even Joseph’s doctor in London has admitted that the tracheostomy could prolong his life.  “A tracheotomy would likely provide for a longer period of life, however, in our view would not result in improvement of well-being and could reduce quality of life,” Dr. Douglas Fraser told the Ontario Consent and Capacity Board in January.

Along with their public information campaign, the hospital announced Sunday that they are considering legal action against unnamed individuals who they say have alleged that doctors might “kill” Joseph or that his death would be a case of euthanasia.

Joseph suffers from a severe neurological disorder, but his specific condition remains undiagnosed.  Doctors have given him no chance of recovery, so his parents, Moe Maraachli and Sana Nader, have asked them to perform a tracheostomy which would enable him to breathe on his own, so that they could take him home.  Their daughter died from similar complications eight years ago, but in that case doctors performed a tracheostomy and they were able to take her home.

On February 17th, Ontario Superior Court Justice Helen Rady upheld a January verdict from the Consent and Capacity Board of Ontario, which had supported the doctors’ move to take Joseph off life support against his parents’ wishes.  The hospital had appeared set to remove Joseph’s life support last Monday, but that got delayed when the family hired expert lawyer Mark Handelman with the financial support of the Euthanasia Prevention Coalition.

Justice Rady’s decision was based on doctors’ testimony that he is in a permanent vegetative state with no brain stem reflex.  But the family says that footage released Thursday by LifeSiteNews belies the doctors’ claim.  The videos, taken last weekend, show him flailing and reacting to tickling.  They also show that his hands have been tied down - a measure the hospital took after Joseph removed the tube from his throat on at least two separate occasions.

The family has been trying to have Joseph transferred to a hospital in the U.S., where they believe he’ll get better care or at least a reassessment, and possibly the tracheostomy they need to bring him home. 

In the last couple days, the case has drawn attention from major pro-life and anti-euthanasia groups in the U.S. who hope to find a hospital willing to take over Joseph’s care.  Family members of euthanasia victim Terri Schiavo travelled to London last week to advocate for Joseph and Fr. Frank Pavone, national director of the U.S.-based Priests for Life, has pledged to pay for Joseph to be moved to a hospital in the U.S.

Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, warned in a Fox news interview that the court decision facilitates a system where doctors are authorized to force life and death decisions on patients.  He has said he believes it is far worse than the “death panels” recently debated in the U.S. as part of the federal health care law.

“It’s the hospitals and the doctors once again usurping their power over the people,” he said.  “That’s what’s happening.  And they have significant power - they have the money and the courts behind them.  It’s absolutely ridiculous.”

Over 12,000 people have rallied behind the parents through the Facebook page “Save baby Joseph”.

To make a donation to cover the legal costs please click here.

To join a Facebook page in support of the parents of Joseph Maraachli, click here.

Contact Information:

Bonnie Adamson
President and CEO, London Health Sciences Centre
800 Commissioners Road East
London, Ontario Canada N6A 5W9
Phone: 519-685-8462
E-mail: bonnie.adamson@lhsc.on.ca

Dalton McGuinty, Premier
Legislative Building
Queen’s Park
Toronto ON M7A 1A1
Fax: (416) 325-3745
E-mail: Use this form.

Tim Hudak, Opposition Leader
The Ontario PC Party
19 Duncan Street
Suite 401
Toronto, ON M5H 3H1
Phone: 416-861-0020
Toll-free: 1-800-903-6453
Fax: 416-861-9593
Email: tim.hudakco@pc.ola.org

[trisham]

I do not understand this at all.

[sometime lurker]

Sorry, but these are "made up terms" the same way all medical terms are "made up." There are guidelines for determining brain death. There are indeed unfortunates who are brain dead - no brain function - whose hearts keep beating. Do you want them all on a ventilator permanently?

[marron]

This is what happens when medical care is politicized, and this is what happens when your doctor answers to someone else besides the patient and the patient’s family.

[Mrs. Don-o]

I think I get your point here, Blood. And if it was a question of continuing the ventilator, I'd be inclined to agree with you: the ventilator is futile in this little boy's case, and can be terribly burdensome to a dying person. It's by no means morally obligatory to prolong the dying process as long as possible.

But (if I'm understanding the details correctly) in this case I think the tracheotomy would be considered "ordinary care." It's a simple, routine way to help a patient breathe. "Invasive"? Yes, but only very slightly. Not expensive. And the little guy would go home, which means the care would be assumed by his parents, significantly cheaper and simpler than keeping him in the hospital.

Plus it would show a decent respect for his grieving parents' wish that they be allowed to spend a little time (more than minutes) with their dying son at ome.

And others are willing to pay ALL the expenses!! So what's the problem? Looks like a stone cold bureaucratic power trip to me. "We have ruled! Quod scripsit, scripsit!"

[sometime lurker]

Actually, they could transfer the child with an endotracheal tube in place, as long as someone manually ambubags him during the transfer. So they’d only have to find a hospital to accept him. It sounds like they already have donors for the procedure, the home ventilator, and the supplies.

[OldPossum]

While I am sorry that this family is having to go through this horrible situation, I am wondering why they never were clued in when their 8-year-old died (apparently from this same neurological problem). A couple I know had two children, both of whom were severely neurologically “disformed” (one lay in her bed for some 18 months before she died...never as much as sat up). It came obvious to them that there was a problem in their genetic material, i.e., should have never had children together and they stopped. Why didn’t this couple?

[Blood of Tyrants]

It is not the tracheotomy costs but the cost of caring for the baby for several more months.

Yes, they pay for their health care. But I can guarantee that this family has already cost the system far more than they will every pay in, thus it is the other taxpayers who will pay.

Third, then I don’t understand what the problem is. Let them.

[wagglebee]

Sorry, but these are "made up terms" the same way all medical terms are "made up." There are guidelines for determining brain death. There are indeed unfortunates who are brain dead - no brain function - whose hearts keep beating.

Actually, the term "brain death" was fabricated as a ruse to allow organ donation while the heart is still beating.

Many doctors and bioethicists want to reject the term altogether.

No ‘moral certainty’ that brain death is really death: prominent Catholic ethics professor Brugger

Re-thinking-organ-donation.

"Brain Death" is Life, Not Death: Neurologists and Bioethicists Unanimous at Conference

"Brain Death" Test Causes Brain Necrosis and Kills Patients: Neurologist to Rome Conference

The Inconvenient Truth About Organ Donations

New Jersey Looking to Harvest More Organs by Easing "Brain Death" Criteria

Can Ambien Wake Up PVS Patients?

Also consider this, if Baby Joseph actually meets any of the criteria for "brain death" he will die within minutes of the ventilator being removed, with or without a tracheotomy.

[wagglebee]

The family's main request is to simply take Baby Joseph home with a tracheotomy knowing that he will probably die within a short time, there is NO COST involved.

Yes, they pay for their health care. But I can guarantee that this family has already cost the system far more than they will every pay in, thus it is the other taxpayers who will pay.

Do you support rationing health care?

[Blood of Tyrants]

And that leads to the question of are they being good stewards of the taxpayers’ money by denying the life extending tracheotomy or are they just stingy?

Even with private health insurance, you cannot demand endless benefits. There will be an end to them. At that point should the taxpayer be on the hook for an indefinite amount of money? In other words, does the sick person or their family have a right to a blank check from the government?

My wife and I had to make a similar decision a couple of years ago with her dying mother. She was very old and weak and on at least a dozen medications for her various ailments and we could have opted for a procedure that would have extended her life by a few weeks, but we knew the inevitable was near. When we saw that she was in no pain, we opted against the procedure and allowed her to slip away.

Could we have demanded more treatment. Yes, and she would have received it. But at some point money will ALWAYS be a factor. You shouldn’t expect money and services from others as if you have a right to it.

[Blood of Tyrants]

Yes, I think that the problem here is that the bureaucracy has declared itself the sole custodian of the child’s health care and even though it will cost them nothing, they are unwilling to give up that control. I cannot imagine why.

[sometime lurker]

I disagree, and so do many physicians, particularly neurologists and neurosurgeons. If it's only a "ruse" to increase organ donation, why are brain dead patients who are unsuitable as organ donors taken off ventilators? Perhaps you might take a look at this article.

Nine Class IV studies have been published on the recognition of brain-death mimics, including fulminant Guillain-Barré syndrome, organophosphate intoxication, high cervical spinal cord injury, lidocaine toxicity, baclofen overdose, and delayed vecuronium clearance.6–14 The description of the examinations provided in these studies indicated that a complete brain death examination was not performed in any of these patients. We found no reports in peer-reviewed medical journals of recovery of brain function after a determination of brain death using the AAN practice parameter. (emphasis added)

Translation - those who don't examine properly to determine brain death will make tragic mistakes. Take home point - do the right exam the right way.

Now, what do you suggest be done with those unfortunates who have had trauma, toxic exposure, cardiac arrest from which they were resuscitated, and whose brains were without oxygen for prolonged periods? Who show no evidence of brain function whatsoever? Should they all be kept on ventilators until the heart gives out?

[Blood of Tyrants]

Be practical. EVERYTHING is rationed. Even health care from private insurance companies. Someone WILL make that decision. Whether it is the individual or their family or an insurance bureaucrat or a government bureaucrat. They WILL make it. Hopefully the individual and their family will make good choices that balance the care they get with the expectations of that care.

Look at it this way: should a person expect the insurance company to pay for a procedure that will extend their life for 6 months if the cost is $2,000?

Okay, what if the cost is $20,000,000,000 and the person will be in a coma the whole time?

I’ll bet that you are tending to say that $20 billion is too much in that case. Does that make you a supporter of health care rationing?

[wagglebee]

However, once rationing is accepted as a premise, the monetary caps always go down and not up.

[wagglebee]

From the article you linked:

What is an adequate observation period to ensure that cessation of neurologic function is permanent?

Recommendations for the length of observation periods have varied extensively throughout the world and the United States. There are no detailed studies on serial examinations in adult patients who have been declared brain dead.

Conclusion.

There is insufficient evidence to determine the minimally acceptable observation period to ensure that neurologic functions have ceased irreversibly.

[sometime lurker]

You are correct that they do not yet have evidence to recommend a minimum observation period. That does not invalidate the guidelines of the 1995 practice parameter.

[Lesforlife]

Baby Joseph has 13,000 friends on Facebook! Yet the hospital continues
to put out disinformation about his condition and is insisting that
he won’t be allowed to have the tracheotomy needed to allow him
to survive the trip home.

[kaila]

I support not spending money on care that is futile.

[kaila]

The Catholics want everyone on a ventilator.

[sometime lurker]

I think you're right, but only for those who misunderstand or refuse to understand some of the issues. Pope John Paul II did not say everyone who stops breathing must be on ventilator:

Euthanasia must be distinguished from the decision to forego so-called "aggressive medical treatment", in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family. In such situations, when death is clearly imminent and inevitable, one can in conscience "refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted".77 Certainly there is a moral obligation to care for oneself and to allow oneself to be cared for, but this duty must take account of concrete circumstances. It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement. To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death.

and from Congregation for the Doctrine of the Faith, Declaration on Euthanasia:

Therefore one cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community.

I see legitimate disagreements in the Baby Joseph case, but not with those who maintain one can never take someone off a vent, or that there is no such thing as brain death.